Dietitian Chloe Hall looks at what Postural Tachycardia Syndrome (PoTS) is, what causes it and how dietitians can help to treat it.
Since the pandemic, I have been supporting an increasing number of patients who have developed PoTS, along with gastrointestinal side effects. The incidence of this condition is not well documented, however prior to the pandemic it had been estimated that 0.2% of the population was affected by this condition, however no study has looked at the UK population specifically and the condition is often underdiagnosed1.
In practice, dietitians are seeing an increase in the number of patients seeking support for PoTS and this is potentially related to the increased prevalence as a result of COVID-192. One of the difficulties in establishing how common the condition is is the lack of universally accepted diagnostic criteria and in many areas a lack of a robust diagnostic and care pathway3.
Unfortunately obtaining a diagnosis is often not straightforward and patients often struggle with symptoms for a long time, leading to understandable frustration. By familiarising ourselves with the condition, and the evidence-based dietary advice that may help to alleviate some of the symptoms, we can ensure that any further delay in treatment is avoided. In this article, I’ll be discussing the symptoms of PoTS, what dietary advice we can give to reduce some of these and other dietary issues that those with the condition may present with.
PoTS is a type of dysautonomia; a complex disorder of the autonomic nervous system, the system that regulates involuntary physiological processes4, 5.
It is defined by the Heart Rhythm Society as a ‘collection of symptoms present for at least six months associated with cardiovascular abnormalities on standing, where the heart rate increases inappropriately and remains persistently raised without significant orthostatic hypotension’1.
In view of this, symptoms can often occur on moving from sitting to standing or standing for a period of time and can often be relieved by lying flat.
The symptoms that those with PoTS may experience can be wide-ranging and not limited to the cardiovascular system. These may include orthostatic, non-orthostatic and general symptoms6, 7. The most common symptoms are detailed below:
Some people with PoTS can be so significantly affected by the condition that it can leave them bedbound or needing to use a wheelchair8.
It is not completely clear what causes PoTS, however in a number of cases it is preceded by physical or immunological stress9, 10. Some of the proposed triggers are detailed below.
There is not one single treatment that is universally effective and response can be very individual1. Before medication is started, non-pharmacological treatments such as diet and fluids, compression garments and exercise should be trialled1. If these do not bring adequate symptom relief then various medications may be used such as:
There are, also, other medications that may be used on an individual basis.
It has been suggested that a nutritional assessment should be offered to all those with PoTS11. Not only can dietary changes and fluids help orthostatic symptoms but dietetic support for those with gastrointestinal symptoms is vital to ensure that someone is able to get the nutrients they need whilst minimising symptoms.
It is important that eating disorders are screened for as studies have found that there is a higher incidence of these amongst adolescents with PoTS12.
Further studies are needed to clarify whether this is, also, true of the adult population, however screening for this in patients of all ages seems sensible given the difficult gastrointestinal symptoms many of those with PoTS experience. These symptoms in themselves may increase the risk of developing an eating disorder13.
In addition to this, if patients are presenting with gastrointestinal symptoms a coeliac screen should be offered, as the risk of coeliac disease may be four times higher in those with PoTS than in those without the condition14. Other key considerations when assessing patients with PoTS, as well as the standard things included in a Dietetic assessment, are any other environmental or physical factors that may affect their symptoms and dietary intake. Non dietary triggers for an exacerbation of PoTS symptoms are shown below.
As previously discussed it is important that diet and fluid are looked at as first line strategies prior to any trial of medications.
First line advice that may help minimize PoTS symptoms include:
The aim of increasing fluid and salt intake is to increase blood volume resulting in reduced symptoms, as those with PoTS are thought to have a 13% reduction in blood volume compared to healthy controls18, 19.
Increasing fluid and salt intake may be challenging, especially for patients that have a reduced intake of food as a result of the, sometimes, debilitating symptoms.
Dietetic support is key to help support patients to do this in a way that is practical for them. Salt tablets are sometimes prescribed by specialist medical teams or electrolyte tablets are available over the counter if patients are struggling to get enough salt through their diet alone.
Those with PoTS experience a range of comorbidities at a higher rate than the general population and these comorbidities can affect their nutritional status further2. These comorbidities include:
As dietitians we are well placed to help support patients with a complex medical history and multiple symptoms, in order to ensure that they are able to have a healthy balanced diet, maintain their weight and enjoy food again. Those with co-existing conditions may follow a range of diets, such as the low histamine diet or the low FODMAP diet, which may impact on their nutritional intake further so dietetic support is particulary important if following any of these.
As up to 90% of those with PoTS have gut symptoms, nutrient deficiencies can occur due to a combination of restrictive diets due to very challenging symptoms, and malabsorption11. Correction of these deficiencies should be a priority, as for some patients the correction of these may improve some of their orthostatic symptoms20. The image shows some of the nutritional deficiencies that can occur due to this condition.
Unintentional weight loss and struggling to maintain a healthy body weight can be common due to the high incidence of gastrointestinal symptoms, food intolerances and co-existing conditions. In addition to this, symptoms may make preparing and cooking food extremely challenging without support and, therefore, practical dietary advice is essential. First line nutrition support should include the use of oral nutritional supplements if required, however often standard first line sip feeds may not be tolerated depending on the co-morbidities and gastrointestinal symptoms11. Based on current research it isn’t clear how many patients need enteral feeding, however those that are more likely to require non oral feeding include those with a lower BMI, have gastrointestinal symptoms and delayed gastric emptying21.
It has become increasingly important with the growing incidence of PoTS post covid that dietitians recognise the symptoms of PoTS. By identifying those patients that we suspect may have developed dysautonomia we can ensure to flag this to a patient’s medical team so that investigations for this can be done, if deemed appropriate, and patients get the support that they need in a timely manner.
Due to the wide-ranging symptoms, the management of PoTS needs a multi-disciplinary (MDT) approach, combining pharmacological and non-pharmacological measures, and dietitians are an important part of that MDT22. It can be an extremely challenging condition to manage and live with and the symptoms can be variable and impact on our patients quality of life so support is vital23.